Wife newly diagnosed

[ROBA2]

My wife has been newly diagnosed with MDS - at this stage we still await the results of a bone marrow biopsy which I guess will give us a more detailed picture of exactly where she might be on the MDS "spectrum" - its very difficult (although her consultant seems very good) to understand exactly what might happen once we have the biopsy results. At the moment we are, of course very anxious and seem to have more questions than answers!! I would however appreciate any thoughts on what would seem to be "obvious symptoms" to look out for - my wife seems pretty fit in that she does not seem to exhibit any of any of the obvious symptoms such as fatigue, anaemia, bleeding/bruising etc. and we are wondering if most sufferers exhibit these symptoms from the start or do they seem to kick in at some particular point as the MDS progresses? It is a worrying time as everyone agrees and any thoughts regarding first diagnosis would be greatly appreciated.

[chris]

Hello there

Firstly, I am so sorry to hear about your wife’s diagnosis. It’s always such a shock to be diagnosed with a disease that most people have never heard of.

I hope you soon get the bone marrow biopsy results as waiting to hear can be an anxious time. Many people diagnosed with MDS are unaware of any obvious symptoms which can make it all the more puzzling.

Have you found the Quick Links page on our website which aims to point you to topics which might be helpful to you? https://mdspatientsupport.org.uk/what-i ... diagnosed/

I’d also suggest you join one of our online support meetings. There’s one today and there’s a meeting for newly diagnosed people on 9th April to which you would be warmly welcome.

Please also know you can contact our support line or send an email if you have queries. We cannot give any clinical advice but can suggest information sources. As you have joined as a member you should also receive our booklet on Understanding MDS,

I hope this helps a little

Best wishes
Chris
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